hi everyone,

steve here, care giver to my father. been a tough walk so far, I have been reading the forums from time time but never posted.

This recurrence business is so painful, basically a secondary has developed near the bottom of the neck where you would have tracheostomy...its advancing quickly and all the doctors are unwilling to operate on it.

We went to the best hospital (publci) in our city to wait for surgery ... doc said shouldn't do chemo, because theres still a chance for operation but we had to wait in line for surgery, during the wait just 2 weeks.. the tumor advanced quickly and now he says he doesnt think he can do the surgery...tumor might be to close to important veins near neck.

Good think i started the second opinion option from john hopkins during that time. just waiting on a reply from them. I pray and hope that they are willing to operate on my father.

Running out of options
My dad went through RAD after his first surgery, so most doctors are already saying that radiation isnt an option and the second surgery would most likely lead to the removal of jaw bone due to side effects from the RAD. leaving us with just surgery....or chemo ...

Spoke with John Hopkins and they are moving the info to the case coordinator, have not reached any physicians yet....

Meanwhile im not going to wait... waiting is the worst thing.. we waited for surgery and then they wouldnt do it

Im taking my dad to a private hospital to get chemo from a doctor that recommended it before we chose to wait for surgery... should have went with his opinon instead, hes recommending docetaxel and carboplatin + Erbitux

dont know wht to do

Im very sorry to hear about your fathers recurrence! Timing can be very important when it comes to treating recurrences.

Selecting the right treatment plan is never an easy decision. Is your father here in the US?

Best wishes!

Steve, I'm so sorry your Dad and family are facing this. A recurrence is so scary. I think you are doing the right thing in going for treatment privately. These things move so fast that we just can not wait.
I'm thinking that the chemo will at least buy time while you wait to hear back from John Hopkins. I would keep ringing them to push your Fathers case. You really do have to advocate strongly. I think that you are doing all that you can and should be very proud of yourself, I'm sure your Dad is.
Tammy

Hi there... sorry about all of this. The wait is the worst and most dangerous part. I know that radiation is likely off the table but sometimes it's a doable situation depending on the previous amount and location. If this is a newer area, they might be able to hit it again. There is also Photodynamic therapy, and surgery as a final option. I would definitely get the second opinion, but in the interim doing what you can via chemo isn't a bad idea.

best of luck and push push push. also you do need to find out for sure if there is lung involvement.

hugs.

Hi Christine,

No, me and my dad are in Hong Kong still, but we are ready to leave any minute as long as John Hopkins say they will take us in.

My dad went and did the chemo yesterday, docetaxel (Taxotere) and carboplatin + Erbitux

Hes not really feeling the side effects yet.

The doctor says that he expects the tumors to shrink ... does anyone know how long before the chemo works? For us its like 3 weeks a cycle.

I also read that some people did induction chemo for 5 days, how come my dad only did it in 1 day ( it was about half the day going through all the chemo meds)

I had TPF Induction Chemo, which is Cisplatin, Taxotere, and 5-FU. The first two chemo's are given in one day, the 5-FU is given over 4 days with continuous infusion. Erbitux, which I had with another Tx, was given in one day along with Taxotere, so the 5-FU may be the reason. Erbitux is fairly new to be added to IC. It was originally PT 25 years ago, and then TPF was found to be better, and still say it is in a recent report I read. IC chemo is still controversial because of the toxicities, but quite effective, and hopefully side effects are lessened with adding Erbitux.

I was only able to do one cycle, 5 days, in 2009, and that killed all my cancer for 8 months, but came back, as I later learned it usually does in less than a year, but the cancer never came back to the primary, tonsil, only the lymph nodes, so hopefully it does the same for your father, and can be managed from there.

Good luck, and best wishes.

thanks so much PaulB!!

Its getting harder and harder for my dad to eat... this tumor near where he had his tracheostomy is slowly making him not able to eat/swallow ..

did anyone here have this type of surgery? Im so worried... what is this chemo doenst shrink the tumor? anyone else had to shrink tumors before being operated on?

Usually it's not an individual chemo that is aimed at shrinking the tumor but a combo, it should work, but I suppose its a crapshoot like anything else since there are so many things that come into play - aggressiveness of the tumor, etc... Ideally it will work to make the tumor smaller so if they do operate there is less damage. - best of luck...

Many people have had chemo to shrink tumors, radio sensitize them, as mentioned with induction chemo, also called neoadjunt therapy. I ran across an article for PCC, Taxotere, Carboplatin, Cetuximab (Erbitux) that I will try to find.

http://jco.ascopubs.org/content/28/1/8.full.pdf?sid=3ec564bc-e0c7-4637-a86d-fbf18b6be4fb

thanks for the article. fingers triple crossed.

its only been like 4 days... but my dad is not taking too well to the 3 drug mixture... he says its giving him a feeling of chest pressure and coughing more...

its only his first cycle... out of possibly 4

sighhh